In a Silent Way

January 26, 2009

Miles at three

Seven years ago Miles was diagnosed as having Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). He had been very slow to learn new words, and was not speaking very much by the time he was 18 months old. Fortunately, our pediatrician was particularly vigilant about possible early signs of autism, and insisted that we have Miles evaluated by a team of developmental specialists.

It’s not easy to hear that your child might never have a “normal” life. The hardest part is the uncertainty that will inform every observation for years to come: Is this behavior normal, or are we seeing an effect of his condition?

Because Miles’ autism had been recognized so early, we learned we were eligible for some services provided by the city and state. He was visited at home once a week by a teacher who specialized in “communication strategies.” Her goal for Miles was to get him to respond to us and to learn some rudimentary sign language to help him talk to us. The sign language helped a lot; to this day Miles will unconsciously sign “more” and “help” when he talks to us.

As his sessions progressed, his teacher suggested that we have Miles’ hearing tested, since he had been sufering from a constant string of ear infections. It took a few months of tests with an audiologist (it’s very difficult to perform hearing tests on toddlers) to determine that Miles was suffering from high-frequency loss due to excessive pressure on his eardrums. In early December  of 2001 (Miles was 2 1/2) drainage tubes were inserted to relieve the pressure. The improvement was immediate: He spent the next few days listening with his hands covering and uncovering his ears. I figured he was doing his own before-and -after comparisons. Miles’ language skills took off, but we discovered that the hearing loss had been replaced by a sensitivity to loud noises.

In one stroke we had managed to replace one autism symptom with another: lack of communication with discomfort with loud sounds. It’s something that persists to this day – Miles may be the only nine-year-old I know who doesn’t play video games with the sound cranked up to full blast. But I’m happy to have to deal with that and be able to have long conversations with him whenever we want.

As for the PDD-NOS, I have since learned that it is considered a temporary diagnosis. Exactly one year ago (I’m not sure why all of Miles’ developmental assessments happen in January) Miles was re-evaluated by the same developmental team. He is now considered to have Asperger’s syndrome, but with some atypical behaviors – strong empathy toward others being the most unusual.

I called the new diagnosis his “software upgrade.” I’m looking forward to a regular release schedule.

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